Norma Smith was diagnosed with stage-three cancer in December.

In Smith’s case, that’s the last stage of her blood cancer, multiple myeloma, which had spread extensively.

As it attacked cells in Smith’s bone marrow, an important part of the immune system, the 62-year-old was eager to start treatments to stop it. What happened instead in the months that followed was Smith’s pharmacy denying and delaying chemotherapy treatments prescribed by Smith’s medical doctor over and over again.

Smith, a retired special education teacher in Fresno, and her husband, Rodney, a retired school psychologist and director of special education, consider their “very expensive” health insurance coverage to be “the best.”

But that insurance didn’t ensure Smith would get the drugs she needed when facing CVS Specialty Pharmacy – the pharmacy their insurance required them to use. Cancer drugs prescribed by Smith’s oncologist were denied because they didn’t follow the standard protocol sequence of medications that Smith’s pharmacy benefit manager, CVS Caremark, had in their guidelines.

That means pharmacy benefit managers have the authority to trump a doctor’s medical judgment without seeing patients or knowing their full medical history, and without accountability for the consequences of what happens to sick people.

Smith is among thousands of documented cases of patients who have been denied needed medications in this way. Doctors and other medical professionals say these denials are only expected to get worse as the country’s largest health insurance companies and pharmacies are increasingly joining forces.

These elusive middlemen with the authority to deny doctors’ prescriptions based on company policies are sometimes referred to as PBMs for short. Doctors and patients believe they are causing life-threatening problems for people like Smith.

The role PBMs play in health care is being examined in some proposed legislation related to costly pharmaceutical drugs and patients’ access to medications.

“Every time we want to make a change (to medications), we have to go through this whole process where someone – and we don’t know who it is – someone has the right and authority to override my judgment and what the patient needs,” said Smith’s oncologist, Dr. Ravi Rao, of cCare Cancer Center in Fresno, “and that person is functioning without us having a recourse to it. He can do whatever he wants, he or she, and I can’t call them and say, ‘Hey, by the way, what you’re saying doesn’t make sense,’ because they are hiding behind all these processes, and we are struggling here.”

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The first cancer drug Smith received was a standard, first-tier chemotherapy medication that she was able to get relatively quickly.

Unfortunately, she had to stop taking it after a couple weeks in January because she had a life-threatening allergic reaction, including trouble breathing and a severe head-to-toe rash.

Rao recommended she be switched to another cancer drug, which was denied by the PBM. She was without needed medicine for nearly two months while her case was on “review” before receiving new medication.

Gov. J.B. Pritzker said Monday that people applying for Medicaid benefits in Illinois will see those applications processed more quickly, and health care providers will be paid more promptly, under a comprehensive reform bill now signed into law.“This legislation launches one of the most aggressive, cross-agency efforts in Illinois history to expand health care access and to eliminate the multi-year Medicaid backlog once and for all,” Pritzker said during a bill-signing ceremony in Chicago.

Medicaid is a publicly-funded health insurance program for low-income families, seniors and the disabled. Established in 1966, it is jointly funded by the state and federal governments and it is the largest health insurance program in Illinois, covering nearly 3 million individuals, or nearly one quarter of the state’s population.

Illinois operates its Medicaid program under what’s known as a “managed care” model. That means people who are covered by the system enroll in a plan administered by private insurance companies, known as managed care organizations, or MCOs. Those companies, in turn, are paid a flat, monthly per-person rate, which they use to pay for each person’s medical care.

In recent years, though, the Illinois program, called

Missouri workers providing care for adults with intellectual and developmental disabilities make less than a Walmart or Target worker, even after a pay increase that went into effect last month. 

The low pay is the main reason about half of Missouri workers quit each year, according to Missouri Developmental Disabilities Division Director Val Huhn.

Starting wages now range between $9.50 and $10.50 an hour thanks to Missouri state lawmakers appropriating $20 million more in general revenue to providers. But advocates worry this isn’t enough to address the chronic worker turnover that affects the quality of care people with intellectual and developmental disabilities receive.

“It's just devastating, not having that reliable staff,” Huhn says. “Can you imagine constantly training somebody on how to brush your teeth if you can’t do that? I mean, just you're just constantly teaching people how to help you.” 

Travis Anderson has spent about a year trying to find a personal care assistant. He’s 45, has a disability and uses a power wheelchair to get around. 

On her first day of work, Kimberly Spitler was handed the lives of 84 people. Spitler was no stranger to working with people with developmental disabilities, but as a former behavioral health advocate within the Arizona public schools, she knew providing adequate care took time. " Is this possible?" Spitler remembers thinking.

During the late hours she’d spend away from her family over the next three years, Spitler learned all too well it was no mistake. It was her caseload from her new employer, the state of Arizona.

Spitler, who's 48, is just one of a group of state developmental disability case workers who say their burgeoning caseloads have cost them much, and compensated them little. Now, Spitler is suing the state of Arizona on behalf of herself and all other people who are similarly situated for unlawfully failing to pay overtime wages.

“A lot of people don't have the funds to pursue a case on their own,” she said. “Or, they're so busy working their job that they just can't.”

The complaint filed on June 25 asks the court to recognize that the state has unjustly profited by denying its employees pay, violating the federal Fair Labor Standards Act and Arizona Wage Statute, which both mandate overtime pay for hourly employees. It alleges that wage theft was willful, interfered with caseworkers' lives, and impeded long-term investment in an agency that serves some of the state's most vulnerable citizens.

Spitler started her job as an hourly caseworker with the Developmental Disabilities Division (DDD) of Arizona’s Department of Economic Security in November 2017. The division provides a range of health care to developmentally disabled adults and children under the Arizona Long Term Care System, an Arizona Medicaid program that works to provide affordable care to disabled individuals.

Like her coworkers, Spitler works with people of all ages who have autism, cerebral palsy, epilepsy, or cognitive or intellectual disabilities — including children under the age of 6 who are at risk of developing a disability.

The Oregon Department of Justice this week broadened its review into several related nonprofits that provide services to adults with developmental disabilities in response to reporting by The Oregonian/OregonLive.

An assistant for Attorney General Ellen Rosenblum formally requested records involving potential conflicts of interest, payments to family members and company officers, and the flow of money between the businesses.

The official request comes three months after the newsroom spotlighted the interweaving of family and financial interests within Alternative Services-Oregon. The state has not launched a formal investigation, and the Tigard-based nonprofit faces no allegations of wrongdoing.

Alternative Services-Oregon is part of a broader network guided by Michigan businessman Arthur Mack, who launched nonprofits for people with developmental disabilities in Michigan, Connecticut, Maine, Oregon and North Carolina.

In the wake of a series of allegations identified by COFAR of poor care of a group home resident, the president and CEO of the nonprofit group home provider has acknowledged missed medical appointments for multiple clients, “failures to follow protocols,” and financial misappropriation in two residences.

The provider, the Center for Human Development (CHD), is funded by the state Department of Developmental Services (DDS). DDS relicensed CHD in 2017 after issuing a licensure report that did not appear to address those managerial problems.

In an August 1 statement provided to COFAR, James Goodwin, CHD’s CEO and president, said his organization has verified that eight clients in two of its group homes missed a total of 59 medical and dental appointments since 2015.

Goodwin said the missed appointments included primary care visits, specialty care visits, and eye and dental exams, and were “a result of failures to adhere to policies in two homes…” He said it was “important to note that clients continued receiving prescription medications during this time, so many appointments were being kept.”

“We can’t comment on the specifics of an individual’s care,” Goodwin’s statement added. “We have identified instances of failures to follow protocols and isolated instances of inappropriate use of financial resources. All funds have been fully reimbursed. We acknowledge the need for improvement in oversight and strengthening of policies, and improvement in communications with family members and guardians, and we have taken substantial steps to make those improvements.”

Foster mother detailed a series of care problems

Goodwin’s statements were in response to a July 15 COFAR blog post, which detailed a series of problems with the care of Timothy Cheeks, a 41-year-old man with Down syndrome who lives in a group home managed by CHD in East Longmeadow .

Since late last year, Tim’s foster mother and guardian, Mary Phaneuf, has raised issues with CHD and DDS regarding Tim’s care at the residence including:

Despite the seriousness of those issues, an online June 2017 DDS licensure inspection report for CHD on the department’s website did not mention those or similar problems in the agency’s group homes.

Goodwin said that immediately upon discovering the “failures in the program” in early January, CHD began making “extensive reviews of and changes to policies, increasing oversight and documentation of clients’ medical care and adding additional safeguards against individual failures to adhere to protocols.”

DDS Commissioner Jane Ryder has not commented on the matter.

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